Friday, May 19, 2006

Hate Speech Every Day

Before I start ranting about the literally murderous attitude expressed in that godawful video from Autism Speaks (and no, I'm not providing a link, as I wouldn't want to be responsible for anyone feeling compelled to wash their brain out with soap), I'm going to make a true confession here: I wasn't always the easiest kid to take care of, either. I wandered off, played in traffic, and had no sense of danger. I climbed trees, large rocks, the furniture, and anything else that was climbable. I thought it was great fun to sneak into a highway bridge construction site and walk across a steel girder high above a river. I also didn't see anything wrong with floating out to the middle of said river on two boards—in February, when the water was ice cold—and, after being rescued by worried neighbors, cheerfully telling another neighbor that the person he thought he had seen walking on the water was Jesus Christ on a raft. Then I got quite indignant when my mom disagreed with my opinion that I hadn't done anything wrong and grounded me for a month.But you know what? I did manage to grow up and become a reasonably well-adjusted adult. Naturally. Without benefit of psychiatric drugs, behavioral programs, or quacky alternative medicine bullshit therapies to cleanse my body of its toxins. Kids grow up. Duh.Parenting is hard work every day, no matter what sort of neurology a kid has. In olden times, people understood this simple fact. That's where the expression "it takes a village to raise a child" came from. Others in the community were always available to help parents with an autistic child who wandered into dangerous places, or an excessively social child who ditched school to hang out with friends, or a child with any kind of problem. (And by the way, there is no such thing as a perfect child who never has any problems.)Nowadays, most parents don't have a village to rely on when they need help with their kids. Instead of having a large extended family close by, parents often live in cities or new suburban developments, far from anyone they know. They have to contend with judgmental neighbors, inadequate schools, financial pressures, an environment that is often stressful and dangerous to children, and the what's-in-it-for-me attitude of the modern world. Rather than understanding that these are structural problems in our society, parents often blame themselves or their kids because life always seems so hard. They get burned out, frustrated, angry, and depressed.At that point, they become easy targets for the propaganda of hate groups such as Autism Speaks, which exhorts them to blame their child's autism for everything that is wrong with their lives. They get the message that, if only they donate enough to research (and the fact that it is actually eugenics research is never mentioned), the yellow brick road will lead them to the Promised Land and all their troubles will magically melt away.And if that doesn't work, well, as the video suggests, there's always murder.This is what I have to say to the Wrights, Alison Wack-Job Singer, and their viciously manipulative collaborators: If a mother drives off a bridge with her child after watching that video, their blood will be on your hands.

"They get the message that, if only they donate enough to research (and the fact that it is actually eugenics research is never mentioned), the yellow brick road will lead them to the Promised Land and all their troubles will magically melt away."

When they get there...Pay no attention to that man behind the cotton/linen curtain (imprinted in green ink). Get 'em all ruby slippers - 'cause Kansas is only a few clicks of the heels away.

Parenting is hard work every day, no matter what sort of neurology a kid has.

Indeed. It's a full-time, energy-intensive, responsibility-laden job. Every time I read about someone saying their kid is so "difficult", or that they don't have any time to themselves, or that it's so expensive, I think -- "Why did you have kids in the first place if you wanted free time / disposable income / a sense of being able to sleep at night without worrying about somoene's safety"?

Different neurologies may bring different challenges (I nearly walked through a pile of broken glass 2 weeks ago when going to get laundry because it didn't immediately occur to me that glass shards = danger), but I don't see how these challenges are somehow qualitatively different from those faced by more "typical" people. NT teenagers regularly end up drunk, pregnant, in car crashes, etc. But you don't see people lining up to cure them of their neurotypicality to keep them out of danger.

I wasn't an easy kid to raise, either -- my mother used to get so frustrated that she'd call up my grandmother to come get me. And I'm glad she did -- my grandmother is an awesome lady, and despite my frequent childhood "tantrums", tendency to climb on every structure in the house, and penchant for dismantling bookshelves and pulling every article of clothing out of chests of drawers, she was able to watch me when my mother couldn't.

This is part of the "village" concept in action, I believe. I experienced it, and my parents experienced it.

I don't know how to get this concept back into society, but it definitely would be welcome.

This is so true. I could do with more help and support with all 3 of my children. That's what makes things hard sometimes, not the fact that my son is autistic. I can easily manage all of them at home and in a few selected places but in most other places it takes 2 adults to keep an eye on them all.

Parenting is hard work every day, no matter what sort of neurology a kid has.

Different neurologies I'm sure present different kinds of challenges. Would it be easier to deal with a teenager who doesn't like to go out and stays home with his books, or an NT teenager who gets girls pregnant or is into drugs? The positive aspects of autism are seldom considered. (Same could be said of relationships with autistics).

BTW, I haven't watched that video, but it sounded like it would make Bruno Bettelheim smile from his grave.

I've very glad about this entry, as far too many people in the autistic community seem content to just attack parents. Many posters on the AFF boards do this all the time. So I agree absolutely with your comments that parents are being sold an ideology that is designed to crush their hopes into the ground. That is a large part of the reason behind such appalling events as the recent case in Britain of a mother jumping off a bridge with her autistic son. I get very uncomfortable with the argument that we should just condemn the parent in this case (as Amanda Baggs argued in a recent post on her blog) because it seems to imply that the wider context of society should be denied. On the other hand, it's certainly true that such actions shouldn't be excused.On a separate point, I was far too busy to post in reply to the post about the genetic testing thing, but I'd just like to say - let's not get too apocalyptic here. Even now, after years of screening for Down's Syndrome, 1 in every 1000 babies in the UK is born with the condition. I really doubt autistic people are going to be wiped out.

On a separate point, I was far too busy to post in reply to the post about the genetic testing thing, but I'd just like to say - let's not get too apocalyptic here. Even now, after years of screening for Down's Syndrome, 1 in every 1000 babies in the UK is born with the condition. I really doubt autistic people are going to be wiped out.

I understand 90% of fetuses that test positive for Down's are aborted. We'll not go away completely, but it would still likely be genocide in a massive scale. I don't think it's acceptable to imply that since not all autistic babies will be aborted, eugenic abortions are not that bad.

I did not mean that the wider context of society should be denied. I do not think the wider context of society should be denied in any murder. But I think that condemning a murder comes before "softening" that condemnation, and that somehow it's always when it's disabled people murdered that people bother talking about context and society and all that anyway. And then they claim they're just all contextual and society-involved and so forth when really they don't tend to claim that about any other murders, they don't go running around after every murder discussing what society drove them to do it and what society taught them and so forth. We're only ever expected to have sympathy for the murderer if the victim is already devalued, and I refuse to take part in that.

I do actually have sympathy for all murderers. But I do not shout that sympathy from the rooftops after a murder, especially not the murder of someone where a lot of people think it's semi-okay to murder that kind of victim.

And I really wish people would grasp that instead of putting all kinds of words in my mouth about who I do and don't attack and so forth.

Also, there are no such real thing as passive non-influential bystanders. The reason for condemning that kind of thing roundly is partly to be that society that is sending a clear message the opposite of what much of society is saying. If everyone condemned that kind of thing, instead of sitting around trying to explain it (and explaining it oh so much more when the victim is autistic or something, of course), there would be a hell of a lot less of it, and a lot of us wouldn't have to fear for our lives all the time.

This is mostly in response to 'rocobly.' I'm on the spectrum and so is my son, and there were times in his infancy and early childhood that were unbearable. (Well, almost, I guess, 'cause I'm still here.) My depression was severe and I'd had undxed, untreated sleep apnea since my simpendinvon was born, which meant a lot of years without sleep. I was desperate. So I appreciate your comments. I think it's important to make a distinction between private experience and systematic, public policy and action. I could persev on this 'cause I have a book I'm working on but here's a scenario I'm certain happens often enough. PRIVATE: Parents have a spectrum kid who is exhausting, worrisome, interesting and exciting. PUBLIC: They get the kid evaluated and the medical establishment declares him or her hopelessly defective. This is because the Whole Child is outside their scope. They are in the deficiency business. Parents are told they must become hyper-attentive to the kid's need for "age appropriate socialization" and other deficiencies that the experts may have ignored. PRIVATE: The parents are being asked to see their child as hopeless and needy, something they don't really believe. But then again there is the future to consider. Will he get a high school diploma? Will she find a decent job? What about having a family? PUBLIC: The parents turn on their TV and get in due course, an ASA public service message, a TV news magazine feature centered on a family's tragedy and the impending triumph from ABA (Hey, he hugs!), and a fear-driven nightly news headline. PRIVATE: Now what? These parents may not sink into CAN(PUBLIC) ideology, but they're stuck with it as the most available slim pickings of a PUBLIC paradigm, which means they are either on their own w/o support or vulnerable to going along for the ride on the brainist bandwagon. I'm tired. Gotta go to bed.

Amanda - we really should be having this discussion on your blog, as it concerns one of your earlier posts. However. I have to admit that my response to it was derived from carefully reading your post and trying to work out what exactly your argument was as I didn't find it very clear. Sorry if you feel I was putting words in your mouth but I was actually responding to this statement in particular: "Fight for all the support systems you want, fight for all the positivity about autism you want, even do it in my name if you want, but do not ever claim that these support systems have failed my caregivers in the way that they have failed me, and do not ever claim that you are doing it because my caregivers weren’t supported enough and therefore they killed me. That insults all the people who have nothing and somehow don’t go around killing each other...".I read this as denying that there is any connection between lack of support services and, for instance, recent cases of mothers suffering from stress-related mental illness killing their autistic children. To argue that there is no connection just flies in the face of reality to be honest.

I don't believe in mental illness, it's a false medical metaphor, I'd think you of all people would understand that.

I don't believe there is absolutely no connection whatsoever between lack of support and people doing awful things, and I never said that, either.

I did say that crying "Lack of support! Lack of support! Poor mother!" is the absolute wrong approach to a death like this. It endangers both future children and future parents. I can't explain the connection but it's there, so think about it some more and talk to someone besides me about this.

It's also an assumption, and it's a dangerous assumption to make, but it's always the first sort of knee-jerk response people have if the child was disabled. It becomes "Oh it's so so hard to take care of them, the person had no support," even if the person had plenty of support.

And all of these things, in the immediate aftermath of a murder, focus attention away from the fact that the act itself was wrong. As I said, argue for those things on someone else's time, not the time of a dead autistic child when they are GOING TO (whether you care about this or not) be used not to create more support but to create sympathy for the murderer who will then not be treated the same as the murderer of a non-disabled child.

If statements like that in the aftermath of a murder are used to create anything like "support", they will be used to create draconian involuntary commitment and forced drugging laws, not support (and those usually only happen if the victim was a "valued" person and the perpetrator had a "mental illness" label, anyway, so that wouldn't apply here).

Do you not understand the fact that every word you say about it being "lack of support" that did it in the immediate aftermath of a murder will be used not to create genuine support but to either create incredibly crappy pseudo-support that creates the kind of monsters you're trying to prevent, or as one more in a pile of excuses to treat these murders as less serious?

I hear what you're saying, Amanda, but this all seems too black and white. It is possible that over in the US things are rather different than where I live in the UK. Here, the two most recent cases of parents killing their severely disabled children were clearly something from something akin to what orthodox opinion would call 'mental illness' or stress-related illness or something, they weren't cold-blooded killers, that was the point. And in another case where a woman had just killed (or abandoned I forget which ) her *non*-disabled baby, she was treated with as much sympathy by the media and other opinion-formers.More broadly, I'm not convinced that arguing that there is a link between cases of parents killing their children in this way, and lack of support (and not just 'lack' BTW but also the exertion of massive pressure on parents) for these parents, will make more such killings likely. That could be one outcome, but it would depend on who was raising the issues and on what basis, among other things. Unless you are arguing that certain unscrupulous parents who want to get rid of their children would be encouraged to kill their children and use lack of support as an excuse? I think this is an extreme scenario and the parents involved would have to be practically psycopaths. Yes it could happen but does that mean that we have to shut up about the fact that there are actually large numbers of families (parents & autistic kids) suffering due to the appalling treatment often meted out by social service providers and other 'experts'?

Hi,I've never posted a comment on your blog, but I've been a fan of it for quite some time.

I watched that video, I don't know why, morbid curiosity. That was just horrendous.

I thought the worst part was the fact that the parents were talking about how their kids have allegedly ruined their lives, right in front of their kids!

I know what it's like to be talked about, like you're not even in the room. It sucks. And, that one mom, who said she would have killed herself and her autistic daughter if it weren't for the fact that she had another, non-autistic, daughter and saying this WHILE SHE WAS HOLDING HER AUTISTIC DAUGHER ON HER LAP, that was sickening.

I agree with you that the parents shouldn't just be blamed, but what a horrible thing for that mother to say. It's terrible that these organizations are selling such tales of desparation, and making parents feel that way about their own children.

Anyhow, you are right; children of all neurologies take work to raise, that's what being a parent is about.

Plus, I mean, all that money people are wasteing on their idiotic plans to "fix" people who think differenly from them could be spent on trying to cure cancer.

What I am arguing, is not only that some people will use "lack of support" as an excuse, but that "lack of support" belongs in other discussions.

When you talk about "lack of support" in the immediate aftermath of a murder, the media and the general public will not look around for your one little sentence saying "but murder is wrong". It will be interpreted as this kind of murder being a little more understandable, your voice will be added (in the public's view) to the voices of people who are in fact excusing it or trying to get lesser charges and such for people killing autistic/disabled people.

You say I am being black and white. I am not, and I really hate being called that in the context of these discussions, because this is a very well-thought-out view, and one that has been discussed in disability rights circles. It doesn't have to do with the world being black and white, it has to do with how the media works, and how public perception works. There are lengthy arguments for this kind of thing. It is not that those various details that you believe are left out (such as "lack of support" contributing to murders) are not taken into account, it is that if this is what is seen discussed after such a murder, it will not be taken the way you think it will.

My viewpoint on the world is not black and white. The way the world will take certain views, at certain times, is. I didn't create that situation, I am merely telling you about it.

Also, the more that parents hear about murder as a way out, the more some will consider it when they are desperate. The more than it is seen as an answer to "lack of support," the more some parents really will be pushed closer to that edge.

As I've said, talk about lack of support all you want, but don't talk about it right over the dead bodies of autistic people because the existence of the autistic person and the value of the autistic person will be drowned out by this. Talk about it other times, because otherwise you will pretty much be taken as part of the people supporting the murderer.

As I said, I didn't create this situation, I don't believe that you are supporting murderers, but the media will, and other people will buy the media's take on it, and that's what matters. I can't help that this situation exists and it is not black and white thinking. There are plenty of people who have written a lot more on this than I have, if I could dig up the old ICAD post I would because I'm tired of trying to explain it and getting it dismissed. But what happens is that the focus goes off the atrocity itself and goes onto pitying the perpetrators, and that becomes a problem for future autistics who may be murdered.

Amanda, I'm sorry that you thought being described as black and white was offensive. I didn't mean to do that, and I apologise. And I don't mean to dismiss what you're saying. On the contrary, I read what you say very carefully as discussions such as these help sharpen my thinking on these issues.

What I'm trying to grope my way toward in these posts is some kind of socialist analysis that doesn't just lay the blame on individual 'bad mothers' wth homicidal tendencies, but on the structures of society itself. Its true that we shouldn't just line up alongside Autism Speaks and talk about how tragic it all was, and sympathise with the parent who committed the crime. But if we instead adopt your view - that we should simply condemn the killing, and separate it out from any discussion of the way society discriminate and oppresses both autistic people and their carers, then it seems that the only course of action that we allow ourselves to have in practical terms is just to call for longer jail terms for parents who commit these crimes. I don't think that will do anything to make such crimes less likely to happen, although I imagine all the pro-death penalty Christian Coalition types would completely agree with you if you were to start a campaign of that nature.

My starting point is neither to sympathise with the mother who commits such a crime, nor is it to simply condemn her. My starting point is that such killings are an inevitable result of a society that systematically discrimates against autistic people (and other disabled people for that matter) at every level. It's that society that has to change. I think we need to draw very radical political conclusions from events of this nature. I would like to see a return to the militant disability rights activism of the past, in which disabled people, parents of disabled children, and anyone who wanted to support them, united together to fight against the system that continues to oppress disabled people. Such a movement really would help to reduce the possibilities of future murders of autistic children far more than just condemning the killers.

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About

This blog began its journey in May 2005, countering misinformation and stereotypes about autism. The title was chosen to make clear that autistic people are not changelings or aliens, but are human beings who have just as much right to inhabit Planet Earth as anyone else.
Now, as it reaches the end of its five-year mission, I would like to thank my readers and everyone who is working toward understanding and acceptance. May you find blessings wherever you go.
— abfh, May 31, 2010